Things are a new normal now. We go to weekly clinic visits to check Jackson's blood levels. Usually Jackson gets a platelet transfusion each week, and we are at the hospital for only about 3 hours once a week. Brian has returned back to his job full time, which is such a blessing. Brian came home from work a few weeks ago and had a funny story to share with me. He said that a guy asked him for help, and Brian mentioned that he had an altered work schedule. The guy asked why, and Brian replied that Jackson was in the hospital. The guy replied "You're still dealing with that?"
Yup, we are still dealing with that.
Remember us? The people that had a kid with cancer? Yup, we're still the people with the kid that has cancer. I feel like we've been on this cancer road for so long that people have forgotten that we are on a different road than the rest of the world.
Things have changed for us, and for our family. I know that I will never be the same. I have changed in so many ways, some happy and some sad. I've experienced things that I never wanted to or expected to experience. Brian and I have had to make hard decisions regarding Jackson's health, and it has been a very rough year.
I want to share a story here about something that Brian and I had a good laugh about. Some of you may not think it's funny, but take it for what it's worth.
I am pretty sure we will never eat at a buffet again. Jackson is currently on a low microbial diet. Basically he can not eat anything that may contain bacteria that could cause him to get sick. So, no restaurants, no fast food, no fountain drinks, no fresh fruits and vegetables, etc. Because of this we haven't eaten out for quite some time- he has been on this diet since his first bone marrow transplant, and will remain on the diet until at least the end of April. Brian and I went out for Brian's birthday dinner in January, and we chose to eat at one of Brian's favorite place Tucanos. Brian refers to Tucanos as "Meat Fest" because they bring big slabs of meat around to each table and slice you off a nice hunk of meat. It's all you can eat, and included in your meal is all you can eat access to an amazing salad bar. As we were at the restaurant, I told Brian that being a Bone Marrow Mama, I didn't know if I could eat there. We had an entire conversation over dinner about how we are so much more aware of germs now. I had Brian laughing when I explained that: "Those waiters, walk through a ginormous crowd carrying our food. Then the come to our table and slice it and we eat it. Not only that, but the salad bar!" I exclaimed. "Every one touches the same serving spoon, then they go back to their tables, and don't even sanitize their hands before they start eating!". Brian and I laughed about contaminated food, and how we shouldn't be eating there at all. Now, I am not saying that Tucanos is in any way a dirty, or nasty restaurant, but I laugh at our heightened awareness of germs. Seriously- if you have a normal immune system, having your meat carried through a crowd of people shouldn't be that big of a deal. But being a crazy Bone Marrow Mama, I freaked at what might have gotten on our food before it got to us.
So, to answer your question. Yes, we are still here. We are still on the "cancer path" and although we are through some of the more rough spots, we still have a LONG way to go. Jackson doesn't get any more official scans (MRI or CAT scan) until April. At that time we will see how his tumor responded to treatment. To be honest, I thought that when Jackson finished chemo that we'd be done with the world of childhood cancer. But here we are, he's done with chemo and we are still a long way from finished.
When Jackson finished his last round of Bone Marrow Transplant, I thought I'd feel relieved. "We are done!" But I didn't feel that relief. Instead I feel fear, and hope, and lots of faith. I am afraid that the chemo didn't work, and that they just stop treatment but don't run scans for months. I am afraid that the tumor will grow while the doctors are not watching it. I am afraid that he will relapse- or that the chemo didn't work at all. But at the same time, I am relieved that we are done with this part. I am grateful that he survived the harsh protocol, and that he is surviving and thriving. I am grateful that he is getting healthier every day, and that he has not had many of the harsh, horrible side effects that could have been. And above all, I have hope. I have hope that my boy will live a long, healthy, cancer free life.
Remember us? We're still here- on this road of childhood cancer. But we've found the beauty that this road of cancer can hold, and we're grateful that even through trials, we can survive and thrive.